My Truth, Part II

Confession. I've been concealing my truth again. I've been in a mental funk for a good four months, and I think it's because I'm not being transparent. Or the super cool buzzword...authentic. We live in a FB edited world, and tend to only show the happy times as if that is real life. But, in all honesty, I wanted to give everyone a break.

Cancer is exhausting, for both the patient and their support team, and mine was an especially long journey. At the beginning when meeting new doctors they would comment on my age, that has since morphed into boy you've had a bumpy road.

After chemo everyone has the same response, "So you're done, right. It's over. You're cured!? Remission?" I've always been particularly slow at answering the last two. Because in many ways, after chemo, the real battle begins. You have a parade of people supporting you during chemo, because it's an obvious physical weakness, but you are very much alone in the scan stage. The mental strength it takes to push through that anxiety, for me, has been an incredible struggle.

At the end of May, I had my first true post-chemo scan. They noted a tiny spot on my right lung. After further testing, inactive PET/too small to biopsy, my oncologist decided on a wait-and-see approach. The scan immediately following our vacation at the end of August showed growth as well as a small spot on the left lung, and a biopsy was ordered. Though the results were not 100% definitive, because once again they didn't retrieve a large enough sample, it's likely metastasis.
So there you go...

It's back.

I knew from the start this was a possibility. While I avoid statistics, because of my dad, I am aware. It's painful. To think of yourself in terms of a percentage instead of a human being. The places your mind wonders. It's not for the faint of heart. But I also know the God that created this body is the ultimate decider, and no matter the statistics, this journey is completely out of my control. No kale diet. No aloe juice. No alkaline water. No medicine. No doctor has or ever will cure cancer.

Think about it. Right now doctors are researching and experimenting with a way to use HIV to cure some late stage cancers. That's a dumbed down version, but yeah. HIV. The disease some claimed God sent to "kill off the gays" is actually being used to save lives. The very disease that brought people to their knees asking why God would send such a terrible illness, may lead to saving far more lives than that which it has taken. Friends. If something like HIV can be made into something beautiful, think about that in terms of our own lives. With time and renewed perspective, we can make anything beautiful. Except spiders.

Going forward. Treatment will be SBRT (radiation). While others may receive daily radiation, SBRT is able to hit the lesions with multiple angles therefore receiving higher dosage requiring fewer treatments. Side effects are minimal, fatigue and possible esophageal irritation. I've already gone through the initial scan, and today I had my "world" tattoos (if you watch Friends, you know). Then, after we return from vacation, the fun starts.

So, it's time for me to warrior up.
Again.
I am
sad.
I am angry.
And, at times,
I am weak.
Very, very weak.
But never
doubt my strength.
Still smiling.
Still laughing.
Still...
and knowing.

Psalms 46:10

Things 2015 Taught Me

* When someone calls me strong, occasionally, it's okay to let out a slightly conceded "yeah, I know." Because yeah, I'm one tough lady.

* When you feel super crabby, smile. Make someone laugh. Being the light in someone else's life, even when you find yourself in a dark place, is an instant mood booster. But it doesn't last long. This is pretty much why cancer requires good humor.

* The occupation "Hospitalist" is loosely translated to:  weekend devil that orders crazy meds until you have no appetite just so they can then order Ensure cause they're bored and think it's funny. I said loosely...

* Asian nurses hurt. You can tell them your skin is sensitive until red in the face, but they are still going to rip that bandage off and probably take some skin for good measure.

* When the C gets dumped into your marriage, it will turn small cracks into rubble or refortify the walls. Not saying our marriage is perfect, but it has certainly proven we make one heck of a strong team.

* Attitude really is everything. Really! Positive, half full, optimistic, joyful. Those people in the infusion room talk about life. Negative, half empty, pessimistic, doubtful. They talk about their side effects. I believe words have power and we receive what we speak. If that's the case, do you want to experience more life or the side effects of living that life. 

Lastly. I think I have previously written, somewhere, that my prayers have always been teach/grow/change and simply to experience everything. And while most may focus on the pain and what cancer or chemo may take away, or let out a eff cancer...

Here's what I know. I have been gifted the ability to experience this side of humanity. And it is an incredible experience. As someone that has prided themselves on being fiercely independent (to a fault), being offered help and humbling myself to accept my own weakness has certainly been a growing experience. 

And the people I don't personally know. Some named. One anonymous. That send unexpected gifts that bring me such joy. I know this will sound strange, but it feels like a reward. I know. Calling cancer a reward, girl lost her mind! Stay with me...

Being a caregiver and loving on my dad as he exited this world, was in a word stressful. Though grateful for the time, it eats away and drains your soul. As caregiver, you are literally giving your energy to that person. And I know this because I feel Fred feeding me with his energy. You don't realize how much it takes of you until they have passed and you're suddenly left without a to-do list. I gave so much of myself, and now my cup is being refilled as people send me their love and prayers.

I mean. Basically what I'm saying is Fred better win the lottery after all of this. Because being a co-caregiver and then primary caregiver proves this man I've married is a SAINT!

The Dentist

A few days before the CT progress check, as I'm getting ready for bed I start having pain in my lower jaw. It goes from mild to severe in a matter of hours. Thankfully I'm a walking pharmacy and have pain meds!

The next morning I search for a dentist. Fun fact. It's nearly impossible to find a dental office open on a Friday. I find one, Berkley Lake Dental (has fantastic reviews on Yelp), his office is in-network, but I have to wait until Saturday. The pain is strange, and I'm having a hard time deciding between dentist or doctor, I reach out to my hygienist friend. She finds it odd as well, but wants me to keep the appointment. Seriously. It never ends. I'm in a constant state of what crazy health thing will happen next?!

Note:  I have not been to a dentist in YEARS. I hate dentists. As a kid, I had a lot of crazy stuff done. Never had cavities, but I was always walking away in pain. Always! As an adult, if dental anxiety is a thing I have it! At the very least, I'm expecting two cavities. 

The hygienist does her thing. Counting plaque and taking X-rays. The dentist comes in to review the X-rays. Four cavities, a root canal and "deep" cleaning. Now it's been a while, but every time I've been to a dentist when diagnosing they point out the problem on X-ray. This dentist did not. Fearing the cost, the treatment plan isn't bad. He even offered additional discounts. 

We schedule the root canal for the week after Thanksgiving. And as we leave he prescribes an antibiotic. Now, I'm incredibly thorough when it comes to filling out medical history and all things medication. I'm already taking an antibiotic for the infection, an additional antibiotic isn't necessary. 

My hygienist friend already warned me about the "deep" cleaning. If you haven't been to a dentist in a while, it's basically code for schedule a deep cleaning and typically unnecessary. She also explained "good" dentists don't do root canals themselves, but refer you to an endodontist. An endodontist specializes in root canals, they have the specialized equipment so it's faster and pain free. The are the dental pro red flags. 

My personal red flags. Not showing me the X-ray at diagnosis. And most important, he wasn't very thorough with my medical history & medication. My point in going was to find out if this was medical or dental pain. My medical history didn't seem like a consideration. Quite honestly, the pain was around the lymph node area and my greatest fear was the cancer had spread. 

After the appointment I call my friend, and go over the details. Something just doesn't seem right. He's nice enough, but the discount starts to feel less about being nice and more his way of making up for sticking it to the cancer patient. Trust your gut! My friend wanted me to visit her dentist for a second opinion. 

By Sunday, the pain that was once severe starts to lessen. By Monday, I only take pain meds to manage the drain tube pain and even that seems minimal compared to Saturday's pain level. 

My friend was able to get me squeezed in for an appointment Monday after the CT. My insurance would not cover additional X-rays, but the dentist eats the cost. (wow) He does a little plaque check. He pulls up the X-ray on the screen in front of the chair. Hello! Four cavities, no deep cleaning, no root canal. Not so much as a cavity in the tooth nutbag dentist at Berkley Lake Dental in Duluth GA diagnosed the root canal. The pain was most likely a hematoma. 

My dear friend just saved me $1500 & some serious PAIN!

As far as nutbag dentist at Berkley Lake Dental in Duluth GA, he can eat my cancer. Yeah. He knew I had cancer. He knew I had been through chemo. And surgery. And so much pain this year. And just because he wanted to earn an extra buck, he was prepared to put me through even more pain. 

More importantly, he very well could have caused delayed diagnosis of something much more severe. This guy is dangerous!

How on Earth do you begin to feel good about yourself? You, Dr. Duc Huynh, are a jack ass! Did offering discounts make you feel better about yourself? You know, I never say eff cancer because I'm quite thankful for the experience and things I've learned, but Dr. Duc Huynh DDS at Berkley Lake Dental in Duluth GA...eff YOU!!!

So yep, I haven't felt this miffed in a long time. Don't mess with the cancer patient! When you exploit their pain to fill your pocket, it is you, Dr. Duc Huynh DDS at Berkley Lake Dental in Duluth GA that will get what you deserve. Don't want to mess with the cancer patient that has some SEO skills. 

Treatment plan from Dr. Duc Huynh DDS at Berkley Lake Dental in Duluth GA:

Treatment plan from the honest dentist:

Drained

Dr. V has no explanation for the fluid return. He thinks it could be possible Dr. S perforated my bowel during surgery, and if that's the case I would need surgery to make repairs. Another surgery!? He orders a CT with barium to check for any "leaks" (his word). 

This is where I fall more deeply in love with Dr. H's office staff. When Dr. H orders a CT, it's scheduled at check out within minutes. When Dr. V orders a CT, I have to call and bark at his office staff to get it scheduled. After multiple calls, over several days, the CT with barium is scheduled for Friday. 

Later, as I'm drinking the blasted barium, I learned the scheduling delay was because the radiologist argued the procedure wouldn't show what Dr. V wanted so he changed it to a CT for better imagery. Yeah. You don't want to tell someone drinking barium the test may not work. Especially someone in my mental state...

Mindset:

What is a word for worse than miserable? My birthday is around the corner. I never make birthday plans, but this year I wanted to do something special. The last two months have been full of hospitals and doctors offices. I desperately needed time for myself. A moment to live. To forget C and celebrate another year lived. 

Now there is a possibility of an additional surgery, which would kill our vacation plans. A vacation that was planned a year ago, months before C re-entered our world. And who cares about me, Fred needs this vacation. He deserves a break from a being caregiver. Good grief. I know that stress. I know that heartbreak. And it kills me that I can't do anything make it better. He has given of himself so much, and I haven't been able to do anything in return. But I can make sure he has a fun & relaxing vacation. Please, sweet Jesus, let me give him this one thing!

The number of tears I have shed during this infection are innumerable. Its winning on so many levels and I hate it! I mean, loosing my hair and identity was a low point...but I still had a life. This is not a life. 

---

The Monday following the CT. We arrive at Dr. V's office for the regularly schedule supply pick. And wait...

"Oh, can you guys come back later today? Dr. V wants to meet with you and go over the CT results."

Dude. I'm pretty sure it's a miracle Fred didn't jump the woman. Sure lady. We don't have jobs like you. He explains to the woman that he has taken off work in order to be there, and now she's asking him to take more time. She looked at him as though he was speaking Mandarin. Consideration of others time, what is that?! And now I officially HATE this office.

We return. And wait all over again. Finally some good news. (Good news usually gets an exclamation point, but I'm so drained at this point my cheer is broken.) The fluid is clearing three more weeks of antibiotic, and if the drain is clear it can be pulled this week. He orders a CT for the week of Thanksgiving to check progress. And it's that fast. From scaring me with surgery to all is well. The C roller coaster is super fun guys!

Another Day, Another Drain

Three weeks pass. I'm feeling better, and am able to get out and drive myself for the first time since the liver surgery. Dr. V orders a CT to check the fluid has/is clear. The results are not good. The fluid has returned, and needs to be drained. An additional two weeks of IV antibiotics. 

Just as I start to feel better, this infection knocks me back down. And sure enough by the weekend I'm feeling the pain again. 

By this point I'm an old friend with all the nurses at the outpatient center, I walk in and one of the nurses sees me and gives me a hug. (50 points!) Today my nurse is Cletus (Janice...she has lots of names). 

Cletus was with me when the first drain was placed, so she knows how much pain I went through. And the same doctor for the procedure, so based on the previous pain he picks a different route for the catheter. No under boob this time! 

It is much easier going in blind not knowing the pain you're about to experience. Once you know, nerves and anxiety take over. Cletus held my hand the entire procedure, and anytime I started to squeeze her hand she pushed a little more sedative. Thankfully going through my back was much less painful than the under boob. Shocking, I know. 

The drain is left in place, and I get to go home with a bag wrapped around my leg. It's painful to move, but I can walk upright vs hunched over with the under boob drain. Small blessings. But the drain makes me miserable. I feel good, but it's too painful to get out and live, and I know once it's removed I can live again. 

I spend the next two weeks at home in bed only getting out for our weekly IV supply run. The drain is clear, but week two the abscess fluid returns. Before the drain was place, we had planned a get together with my dad's family. I was desperately hoping the drain would be pulled & I could enjoy that time pain free. But no, the infection wins again. 

Boob Rigged

So you'd think once a drain tube is removed the pain goes away, but this is not the case. The morning after being released from the hospital, I have an appointment with the Russian's office for IV training. Recall the drain tube site was basically my under boob. Right where underwire or elastic of a sports bra hits. You get where I'm going. I was going bra-less. To some no big deal. To others...

Pain. Walking hunched over with my right arm bent to support my boob. The Russian's staff looks at me like I'm a complete idiot. "Girrrrl! Why you walking like that? What's going on wich your boob?" I explain. "Well girl, we gotta rig that mess up. Can't have you walking around like that!" They grab a roll of gauze and get to work. When finished, I have a figure 8 wrapped from boob to neck. And it worked. 

Then they get to the business of teaching me the IV routine. The process itself isn't a problem, but the whole scheduling life around the IV schedule...not so fun. I get my first infusion in his office, and other than leaving a funky taste in my mouth that made me a little nauseous all goes well. 

We return home, and as scheduled I start the second infusion. Nausea is worse. By the time I complete the third infusion, I'm reaching for a barf bags. (By now Fred keeps them strategically placed around the house, I typically don't get much warning when nausea hits.) We call the 24-hour nurse line. She tells me to stop infusions until further notice. 

The next morning Dr. V's office calls. We need to go back to his office and pick up supplies, he wants me to switch back to the first antibiotic I received in the hospital. Recall he switched meds in the hospital, but I only got one infusion in because he forgot to put in the orders. So if he had done his job, we would have known antibiotic #2 makes me sick. Fantastic! 

This is a Thursday. I can't drive myself, and by this point Fred has taken off far too much work, so we make an appointment to pick up the new antibiotic/supplies Monday. We get to his office around 9AM, and wait. And wait. And wait some more. They finally call my name...

"Oh, I'm sorry antibiotic #1 is on back order you'll have to stick with what you have." 

Guys. We about lost it. First, Dr. V's office is not what I would consider a convenient drive. Second, they had since Thursday to figure out the back order situation AND call us. More importantly why did we have to sit for 45 minutes in the waiting room for nothing! They may have rigged my boob, but I'm otherwise thoroughly unimpressed with Dr. V's office. 

About Nurses

The nursing staff at Gwinnett Medical Duluth deserves some praise. While I was terribly miserable in the gerbil cage, they kept me laughing and entertained. I guess it comes with being young and not a complainer, but fairly often they would come into my room just to chat. So see terrible-awful Emory GenPop nursing staff, it's not me - it's YOU! 

It's here that, try as I may, I have accepted I'm never going to be able to connect with Asian nurses. The older the more difficult. Its cultural. You are their job. Filipino totally different. I recognize the accent. Talk about lumpia and throw out the only Tagalog word I know and I've got 'em! Yep, totally made it a game at this point. 

-10 points:  make the Asian nurse smile

-100 points:  make the Asian nurse laugh

-1 billion points:  Asian nurse gently removes a bandage

[Note:  Filipinos are Pacific Islanders not Asians, but I know...white people have difficulties distinguishing the two. If you're going to call them Asian, call them happy Asians. Watch Manny Pacquiao enter a boxing ring and you'll understand.]

It's here the nurses share hilarious stories about other patients. Like the guy that, not even kidding, asked the nurse for a back rub. I nearly laughed out the drain tube from that one. Or the man (not elderly, not paralyzed, no broken bone, or so much as a scratch on one arm) asked if the nurse was going to feed him his lunch. I was in such shock I couldn't even laugh. Either his wife does everything for him including wipe his butt, or the man is watching way too much porn!

It's here, that although I've heard it over and over, I start to accept that yes I am a positive person. And I can't quite understand why they tell me this. They always ask (because I'm young), I share my story (caregiver turned cancer patient), and they tell me I have a good attitude. Is it a feeling I project? Is it because I smile and make jokes? Or simply that I don't break down in tears? And in fact, on occasion, my story brings them to tears. Basically, show me the opposite so I can understand what a bad attitude looks like. 

It's here I get my first hug from a nurse because, while happy for me, she was sad to have me leave. And it's here I make it a challenge, 50 points per hug.